Friday, June 17, 2011

Resistance and Relief

Have you ever wanted someone to do something because you knew it would be good for them, but despite your efforts that person tried everything they could to avoid doing it? Maybe it was your child giving you every excuse in the book trying to delay bedtime, or something more serious like a terminally-ill relative telling you all the reasons why they don't need a doctor and don't want any therapy?

Well, thinking back on everything that happened yesterday, I realized that I was being that person with God.

Yesterday, after our morning visit with Alicia, our hearts were pretty heavy, as evidenced by my entry on "Why?" I was really struggling with God. During our visit we were told that Alicia would probably need surgery for her PDA sooner rather than later. And for Linda and I, we reacted as if the doctors had just passed down a death sentence for Alicia. We were moaning and groaning, literally, and we were crying out to God and begging him to just heal her so that she wouldn't need surgery. And it took everything we had to just submit and trust him even though we didn't really understand. We didn't want our little girl to go through dangerous surgery, didn't he understand how important this was? Why wouldn't he just heal her?! Why wouldn't he just take away the problem. We knew he could.

Our hearts were pretty heavy for most of the morning into the afternoon. Then we got a call from the hospital. It was our doctor. "Baba, (They call all parents by our titles, baba and mama.) After evaluating your daughter's situation, we feel that it's best if we go ahead with surgery. We've already notified the surgeon. Would you mind coming over to the hospital in a couple of hours, so we can explain the situation to you. Then if you give the go ahead, we'd like you to sign some waver forms so that we can proceed with the surgery." [I'm translating. =)]

Somehow during the conversation, my soul did a 180. I was unaware of it at first, but I think as I hung up the phone and told Linda the news, I realized that no longer was I so worried about the surgery, in fact, the oddest thing is I started to get excited and I started to rejoice. I believe God was assuring me that this surgery was going to be a good thing and that it was going to be a turning point in Alicia's health.

And I'm thankful for this unexpected joy, because it gave me the strength to support Linda as she grieved and processed the news. But you know what, through this experience the one thing I'm learning a lot about is our Heavenly Father's heart for us. He is so sweet. As any loving father would do for a child who was scared, he began to comfort us. We were fighting him the whole way, yet he took the time to comfort us.

First, it was the assurance I felt in my spirit that everything was going to be all right -- no, better than all right. I felt that this was going to be a turning point for Alicia's time in the ICU. Second, while I got on the phone and Internet to spread the news about the surgery and to ask people to pray, Linda got out our premie book and looked up the section about surgery. After she was done reading, she passed it on to me. As I read, I just felt more and more assured that things were going to be fine. First, PDA surgery was the first surgery described in that section of the book, which made me think OK, for it to be even in the book, and for it to be first, it must be a pretty common procedure. Second, the book gave us a better understanding of what happens during the procedure . It explained that while yes a PDA does affect the heart, many people mistakingly think of it as heart surgery, when in fact, the heart is never even touched during the procedure. The authors also assured us that while any surgery, especially surgery done on such a small person had potential complications and risks, they were rare and temporary. In fact, the survival rate of this surgery was nearly 100%. The book went on to explain that while it's natural to have our concerns as parents, we don't need to be overly anxious because the surgeons who perform these operations are well-trained professionals that have gone through years of training before doing these procedures. And get this, the book encouraged us to look at the surgery as a "turning point" in our child's health - the very words that God had spoken to my spirit earlier!

When we got to the hospital, we were told to wait outside while the doctors prepped a few things and then they would brief us on everything. They also told us that there was going to be an emergency fire drill and to not get freaked out if we see people rushing about. I was like, uh, OK. Turns out that this drill provided much needed comic relief for Linda and I. I'll explain later.

So after a few minutes, we were ushered into the NICU, and met with our supervising physician Dr. Su. He reminded us that from the beginning Alicia has had a PDA and that after using two rounds of medicine Alicia's ductus arteriosus remains open. Now in situations like this, the first things doctors do is to just observe. Sometimes the DA remains open but it doesn't affect the child and so they can leave it alone until the child is older and see if it closes on its own. If later it doesn't close on it's own, then they can do surgery to close it. The doctors always prefer doing surgery on an older child, because they are stronger and the risks are lower. Unfortunately, Alicia's PDA was affecting her heart and her lungs. And they suspected that that's what's been causing her to have breathing problems over the past week. The doctor also showed us echocardiograms (heart sonograms) that showed Alicia's heart expanding over time and fluid filling her lungs. He told us that they had tried to use medicine to help Alicia's heart not to have to work so hard, and that she had responded well to it at first, but then her heart started to swell again. And judging by the fact that her heartrate has been really high the past couple of days, he felt that her heart was under too much stress and it would be best to do the surgery sooner before things got more critical.

Now here's the comic relief part I was talking about earlier, halfway through the doctor explaining everything to us, suddenly we heard an announcement that there was a fire and for all of us to evacuate the building in an orderly fashion. Then the drill began. Whistles blowing, lights flashing, nurses rushing about preparing the room as if it were a real emergency. Then came nurses carrying a couple of stretchers with dummies on them as they practiced evacuating patients. It took some control for Linda and I not to start laughing out loud. At one point, Linda covered her mouth to contain her laughter, which one doctor mistook for her being emotional about the surgery so she gave her a tissue. Haha. Seriously, it was chaotic. I understand the importance of the drill, and I'm thankful they were doing it, but the whistles, the lights and the parade of nurses were just a bit much to take in while we were having such a serious conversation about our daughter. But, like I said, it was good comic relief.

So after we spoke to our neonatologist (the doctor in charge of the NICU), he had us speak to one of the surgeons who would be present at Alicia's operation. This surgeon was a fellow, meaning that he was in training for this particular type of surgery. (The primary surgeon who would be the one operating on Alicia was in the midst of another surgery at that time.) OK. This guy, literally, was putting me to sleep. He had this odd tick where his head would bob as he talked and he spoke in a really dull monotone. Imagine a Ben Stein bobble head doll in doctor's scrubs droning on about the intricacies of PDA surgery and you've got an approximation of this guy. I have to say as sleep inducing as this guy was, it gave me an odd sort of comfort that this surgery seemed pretty routine and commonplace for him. Of course, they always have to give the obligatory warning of risks, but overall he seemed pretty confident that the surgery would go smoothly. He explained that they would first pinch the PDA closed and see how her body responded to the closure. Once they were sure that her body could withstand the change, then they would close off the ductus by either tying it shut or clamping it with a metal clip. Eventually, the ductus arteriosus would disolve and dissappear completely on its own. When we asked the doctor about the success rate of this kind of surgery, he continued his monotone drone but added a smirk and said, "Pretty much everyone who goes through this surgery is fine." That was reassuring.

After our meeting with Dr. Bobble Head, we signed off on the surgery and waited outside for the arrival of the primary surgeon and anestheologist. While we were waiting, another parade passed by us. This time it was a parade of surgeons and what we can only assume were operating room personnel. They were pushing a couple of trays of what I think were surgery tools. (I couldn't really tell, because they were all covered. Probably to keep them sterile.) After about half an hour, the surgeon came out and greeted us. He assured us that it was a pretty quick procedure and that Alicia wouldn't feel any pain or remember any of it. Then we met with the anestheologist who explained that he was going to use general anesthesia to knock Alicia out so that she would be asleep through the whole procedure. He of course, once again, notified us of certain risks and then asked us to sign more waver forms.

Then it was more waiting. Thinking that it might take awhile, Linda decided to ask her cousin to come pick her up and drive her home so she could grab some food and do some pumping. As for me, I passed the time reading up on PDA and PDA surgery or PDA litigation as it's called. During my research I came across a video of the surgery on Youtube, so out of morbid curiosity, I watched it. It was fascinating. Did you know that lungs are pink? Made me think of how, I've never seen my lungs. Weird thought, I know.

Well, surgery went pretty quickly, before I knew it, one of the neonatologists came out followed by the surgeon telling me that it was done and that everything went pretty smoothly. The surgeon, in fact, spoke quite nonchalantly as if the surgery was nothing, a piece of cake, easy as pie. At first, I was like, really? That's it. My daughter just went through surgery and you come out and say, "OK, it's done." I mean what happened? Details, please! But then I thought about it and realized that it's good that he was so casual. I mean, that means that it wasn't a big deal, that everything was routine and that it went really smooth. Praise the Lord.

We did get some details from her neonatologists later on. They said that things went pretty smoothly, and in fact, they were surprised by how quickly it was over. They said that Alicia's blood pressure held steady throughout the procedure, and that she did really well during the whole thing. There was a small problem during the surgery with either her oxygen levels or blood or something, I can't remember now, but they were able to monitor it and fix it, so it wasn't a big deal.

After Linda got back from the apartment, we were let in to see Alicia. When we got to her isolette, she was still asleep from the affects of the anesthesia. So tiny, but alive! We told her that she was an amazing little girl, so strong, and told her to rest and that Mommy and Daddy would be back the next day to see her. Doctors told us that they would be monitoring her throughout the night and over the next few days to see the affect of anesthesia on her and also how her body responds after this surgery. They also assured us that they would be giving her some pain medication through the IV to help ease her pain as the anesthesia wore off.

Linda and I came home, exhausted, but happy that it was all over.

This morning, we went back again to see our little girl. It was so good to see her. She was awake and had her eyes wide open. She seemed like she was doing much better. Such a brave little girl. As we took in the sight of our little girl, we noticed that she seemed to be crying. Her face was scrunched up a bit and she had tears coming out of the corners of her eyes. It was heart wrenching. When we asked the doctor, she guessed that she was maybe feeling some pain from her surgical wounds, but assured us that they were giving her medicine to take care of it, so we felt more at ease. We spoke to Alicia and sang to her, and as we did, it seemed like she felt better and settled down a bit.

She was definitely more alert, and we saw more of the vigor and vitality that she had in her first few days after birth. Dr. Su came over during our visit and told us that things looked good after the surgery. Her blood pressure has stabilized, her breathing has improved, and her heartrate has dropped significantly. He said that these are good signs. He also mentioned that under normal circumstances, a child who's made it past the 2-week mark would be considered stable, but because of complications from this PDA, it took Alicia a bit longer to stabilize, but based on his readings from this morning, he felt that she's doing a lot better. Now, the one thing he's most concerned about and something that he will need to monitor is if there was any brain damage from the anesthesia. He told us that the potential for brain damage is high in children this young and small, and that while it's not always the case that there is brain damage, he couldn't give us any guarantees that she would be completely fine. Well, we're OK with that. We're learning that these warnings are just that, warnings. Doesn't mean that they will happen, but just that there is a chance for these things to occur. And besides, Alicia is in the hands of a greater physician, so we're not worried.

After our discussion with Dr. Su, it was about time for us to go, so we said goodbye to Alicia and left her with her iPod so she could still have a bit of Mommy and Daddy with her even after we've left. And as we said goodbye, we noticed that our little girl closed her eyes and seemed to go to sleep. It was as if after our visit she felt like she could rest again.

On the way home, Linda was rather cheery, and she turned to me and said, "I've got this odd feeling, and at first I didn't know what it was. It's something I haven't felt in a long time. But now I know what it is. It's relief!" And I think that's a good word - relief.

It's like God told us before the surgery, this is going to help Alicia to grow stronger and healthier. And I'm glad that he didn't listen to us when we told him we didn't want this surgery. He knew that despite all the "risks" this surgery really wasn't a big deal, and in the end would really go a long way to turning Alicia's health around.

I felt like yesterday, God gave me an illustration of Alicia's condition. Alicia's health was like a leaky bucket. We would fill it up and it would look full, but then little by little the water would drip out. This analogy was confirmed by a pediatrician friend of mine after she found about Alicia's surgery. She said now that the hole is plugged up, they have fixed one more obstacle and lessened the burden on her body so she can heal and grow. The PDA had been stressing her heart so much that the nutrition and calories she was taking in were going toward pumping the heart extra hard, instead of other things like growing. So now that the PDA is closed off and her heart seems not so strained, we pray for some growth spurts.

Thankfully, Alicia's digestion continues to do well, they were able to get her back on a bit of milk this morning. So prognosis looks good friends.

So back to what I was saying earlier about resisting God on this surgery and now having relief on the other end. Somehow in my spirit as I was wrestling with God about this, I knew that once it was all over, I would wonder what I was so worried about. And it's true. Now on the other side of things, I look back and think, OK that wasn't so bad.

Through it all, God was ever-patient, ever-gracious and ever-loving. He definitely carried us through.

And a thought came to me last night, God was actually answering our prayers in allowing this surgery to be done so early. We had prayed that she would be able to be discharged sooner rather than later, and I believe that postponing this surgery would in the end postpone her ultimate discharge. So in reality, God was answering our prayers and doing what he felt and knew was best.

Definitely a journey of trust and faith. Sometimes, we really don't get it. It's easy to think, "Come on God, what are you doing?! This doesn't make any sense!" But the lesson is to trust. We remember he is a good God, a loving God, one who desires the best for us.

Remember what God reminded me of yesterday? "Trust in the Lord with all your heart and lean not on your understanding. In all of your ways acknowledge him and he will make your paths straight." Lean not on your own understanding. Sometimes I think I'm so smart. What I'm realizing is that I'm not, especially when it comes to medical stuff. I mean, I told people that Alicia had a hole in her heart! Goes to show you what I know. Haha.

Trust brings relief. Resistance brings grief. =) Choice is ours.

Well, now we just wait. We see how Alicia progresses from here on out!

I'll keep you posted.



  1. I'm so glad to hear that you have experienced some relief! That makes me so happy. :) can't wait to hear more about Alicia's progress and see pictures of her face!

  2. amen to "turning point" for alicia. noah had a surgery this year regarding his breathing and although it took us a loooong time decide whether to get the surgery or not (we also waited and wondered why God couldn't heal it naturally), we are so glad we did it (one of the best decisions we made as parents for noah). it was life changing for him: he doesn't stop breathing at night anymore, he has more energy during the day, he feels better...sometimes God heals through surgery and hands of doctors! so amen to alicia's turning point!

    ~aika and joe